It's the club no one wants to join. It's more like the Mob in that the only way out becomes death. Like the Boy Scouts, as we try to always be prepared. And the girl scouts, as we all love cookies...
I attended the first official meeting of the Metastatic Breast Cancer Support Group at my local hospital. I did not do as I wanted to in taking flowers to set seats for 2 local club members who have recently passed. I did bring up their names, and shared that the Lisa R. had wanted such a group for a long time, so it was a triumph for her as well.
I learned that I never want to go first in introducing around the table, or comment on much until every has been introduced. I put my foot in my mouth, and hope it didn't scare or hurt the feelings of a very new club member, who had just come up from the minors to be with us. She has my same doctor, and her recent diagnosis I'm sure had much more to do with him jumping on the Facilitator to provide this group than did my occasional bitching about it. She, though, is exactly why this group needed to be. She attended the Breast Cancer Support Group meetings, and was brave enough to strike out with the Un-Cured and attend this new meeting.
I've felt guilty all week about my verbal misstep, and am still debating on waiting to see them all again, or writing someone a letter. My dear sweet KNOWLEDGEABLE doctor is co-facilitating. I knew I should have taken paper on which to keep notes, as he gave several good-to-know tidbits of information. Next time I certainly will have notebook in hand.
The woman with the new diagnosis has three young children. The woman who sat next to me has two young children. I have one children, but he is not young. He is technically an adult, but not grown up and on his own and independent yet.
My main point of issue right now is the financial battle to stay insured and pay for treatment, while still feeding us at home...somehow. I have a lot of help with my insurance premiums, and while making it to Medicare has been my holy grail, things will still not be perfectly manageable then either.
I left the group feeling rather depressed. Mostly because of my misspeak, I think. But what I really feel, as far as me and this group (the facilitator asked me in the hall after as we were leaving if the group was what I needed, or something. I put my arm around the Rookie and said that yes, it needed to be here especially for her.) is that I need to be there at this one, even when it's not just for myself. This is something I feel I can support just to be supportive. Down the line, I am sure that when I need more support, I will find it there.
So that's the thing. I, personally, do not feel the need for the group. But I strongly feel that the group needs to BE. Personally, I cut that facilitator and her support groups OUT of my life and sought (and found) support online. I needed a group like that in the beginning, when I would stay up nights trying to find info on the internet. I needed that group when I was searching for support. Instead, I found Inspire.Com, and the women there ARE my support group. Because of this Cutting-Out I did, it was hard to go back. But because my doctor is involved, and because I want the group to solidify and stay in place for those who are searching, for those who have recently gotten their diagnosis. For them, it needs to be a soft place of understanding, support, and thanks to my doctor, information.
So even if I do not feel, as of yet, that I need to be there for ME, I do feel I need to there for the others, to make the group attended and relevant.
The day after the group, I read online that one of the bloggers I followed, Sarah, with Stage IV ovarian cancer, had passed away. I sobbed and sobbed. She has young children and a husband. Sarah blogged at The Carcinista, and she was witty and a great writer. She was still out going places within the past month, I believe. Another blogger, Ann, at Breast Cancer? But Doctor... I hate pink! posted a tribute to Sarah with a link to an article Sarah had written for her this past October on Pinktober from a Teal Point of View.
Just a couple of days later, this morning, I found that my dear friend, Barbie from Inspire.com had passed away. A couple of months ago, she went on a vacation. We talked before her vacation, but hadn't spoken after she got home. I found out from another dear friend, Mary, that Barbie was ill but being taken good care of and was surrounded by her family. Mary printed and mailed off our well-wishes to her, as she wasn't up to using the computer. The news came through Mary this morning that Barbie had passed away in the night. Barbie had been very involved and hosted a stop-over of the The Pink Pedal group, who were biking cross-country to raise money for BC research last year. Barbie shared my snark, and we enjoyed our 'side-bars' of discussion of the discussions on Inspire.com.
I feel guilty when I cry and complain about my stable, though by no means pain-free, bone metastasis. I feel guilty when I speak easily of death in front of people who, while they may not fear it, certainly want to put it off for as long as they can to raise their children. I don't know if I should go to the support group next month mourning Sarah and Barbie. I think I should always be there, as it is something I believe in, even if I don't believe too much in the facilitator. It is hard to have a group, when someone like me doesn't feel certain that I will put myself through much of it at all, when that time comes, where we want to keep the balance supportive and encouraging for the women with families. They can fight this for as long as their bodies can stand the treatments. That's usually how it ends up. Someone either runs out of treatment options, or their body just can't take it any longer. But I know that these ladies, like my dear friend Annette, will put themselves through everything offered to have more time to raise those children. I hope that our Rookie's 2 nodules in her lungs either turn out to be not cancer, or are easily beaten down. Working forward with bone only, her chances of keeping it at bay for a long time are very good.
So today I remember and honor Debbie, Lisa, Sarah and Barbie. I pray for their families, and know that the ladies are resting pain-free in paradise.
And today I pledge my support to the group, and to the people there giving it their best.
1 comment:
You are amazing. Really.
I talk about stuff in Rlf Soc @ church that I think (later) no one needs (or wants) to hear about. Stuff about my kids, my experiences in learning and overcoming, and mental illness in general; and how all that relates to my learning something new in the gospel. But it takes longer to say it all than just a quit 2 second typical Rlf comment.
A woman with 1 Asperger's and 1 ADHD kid moved into the ward a while back. My VT brought her to visit when her VT companion had sick kids. So the three of us could laugh about stuff that no one else in the ward would ever think was funny. (My VT has a kid with Tourette's).
And there are things that I never said in Rlf Soc about diagnoses and experiences, which I know no one could relate to, before now. But somehow, I don't feel the overwhelming need to share it with anyone now; partly perhaps, because she already knows.
Good for you, just being there.
Post a Comment